Experimental drug offers hope for Haslett fifth-grader

Will Goodale is undergoing a series of radiation treatments in Chicago before starting a clinical trial involving the use of an experimental drug. A GoFundMe page has raised nearly $20,000 toward a $25,000 goal, and other fundraising events continue.(Photo: Courtesy photo)

MERIDIAN TWP. — A Haslett fifth-grader with a cancerous brain tumor is undergoing a series of radiation treatments in Chicago before starting treatments involving an experimental drug.

They’re treatments that almost didn’t happen.

The community is rallying for 10-year-old Will Goodale, who lives in Okemos but attends Ralya Elementary School in Haslett. A GoFundMe page has raised nearly $20,000 toward a $25,000 goal, and other fundraising events continue.

Meanwhile Will’s struggle continues. The radiation treatments are at the Ann and Robert H. Lurie Children’s Hospital, and on Friday he was at the nearby Rehabilitation Institute of Chicago.

“They want to keep his muscles fit and his joints stretched.” Will’s father, attorney Shane Goodale, said by phone Friday.

Goodale said his son’s spirits are up and down, but Friday was a good day.

“Sometimes he’ll read the emails from his school, from his classroom,” Goodale said. “I think he gets his spirits down because he wants to back at school and be with all his friends, and basically get back home.

“And we just can’t do that at this point.”

Seeking a clinical trial

Goodale suspected something was amiss in mid-June, when Will was having trouble wearing a baseball glove. The boy complained of headaches and had recent falls. Will spilled his drink three times at a local restaurant.

Doctors confirmed a brain tumor.

Shane and Ronda Goodale took their son to the Dana-Farber Cancer Institute of Boston.

On Aug. 1, Will had a craniotomy, a procedure in which a portion of bone is removed from the skull, exposing the brain.

The Goodales hoped to qualify for a clinical trial to offset some of the costs. The biopsy report came back, and Will did not qualify for a clinical trial in Boston. After checking with experts in Chicago, Cincinnati, Texas and Maryland, they were told Will qualified for a trial at Lurie involving an experimental drug called Veliparib (ABT-888).

The family returned from Boston, spent a night at their Okemos home and drove to Chicago to meet with a key doctor, Goodale said.

But there was a problem.

Treatment at last

About three weeks ago, the Goodales got a call on a Saturday morning while staying at the Ronald McDonald House in Chicago. Shane was told the trial had a 30-day window from diagnosis to treatment. That Saturday was Day 29, and Monday would be too late.

“So I thought, ‘What in the world are we going to do now?’” Goodale said. “‘We left Boston and came all this way. What are we going to do now?’”

Goodale sought clearance for “compassionate use” of the drug from its maker, AbbVie, the U.S. Food and Drug Administration and an institutional review board.

Within 10 days, he had it.

In a way, Goodale sees it as a “blessing in disguise.” If a more promising drug comes along, he said, the Goodales can try it. That wouldn’t have been possible if Will had been part of a clinical trial.

As of Friday, Goodale said, Will had completed 16 of 30 radiation treatments. When they’re done, Will will have a “rest period” at home before he starts monthly visits to Chicago for chemotherapy and the drug.

Raising money

With out-of-pocket expenses projected at around $35,000 — and Shane and Ronda not working while they care for their son — others are helping out.

There’s been a benefit concert at Gallery Brew Pub in Portland, and Funxtional Fitness gym in Perry had T-shirts printed up that say: “Where there’s a Will there’s a way ... Friends Don’t Let Friends Fight Alone.”

Sales of the shirts raised $2,000 in the first two days, and many were sold during an open house at Ralya on Sept. 2.

A benefit was held Monday at Culver’s in Okemos, and another is set for Nov. 9 at the Blue Gill Grill in Haslett, Goodale said.

Other events are pending, he said.

Contact Curt Smith at (517) 377-1226 or csmith@lsj.com. Follow him on Twitter @CurtSmithLSJ.